Lloyd Riley, Deputy Director of Policy & Research at Compassion in Dying, said:

 

“We offer our sincere condolences to the family concerned in the SPSO’s recent report. We welcome the SPSO’s recommendations, which rightly stress the importance of following proper procedures for discussing and documenting DNACPR decisions [also known as DNR or DNAR].

“CPR is a highly invasive procedure that is often futile and rarely returns people to the same quality of life. DNR discussions and decisions are therefore an essential part of good end-of-care, protecting people from a treatment that could do more harm than good while ensuring all other appropriate care and treatment is still provided. Having supported thousands of people with queries relating to CPR and DNR, we know that it is often a lack of communication about these decisions – not the decision itself – that can cause patients and families significant distress, confusion, guilt and mistrust.

“A decision not to attempt CPR is ultimately a clinical one, and individuals and those close to them do not have a legal right to demand treatment that is deemed to be inappropriate. However it is absolutely essential – and required by the 2016 Scottish DNACPR policy – that the decision is discussed in a timely, clear and sensitive way with a patient and their family, explaining the reasons for it and coming to a shared understanding about the person’s health and care, while being clear that consent is not required. If we are to ensure end-of-life care is truly person-centred, we cannot shy away from having important DNR conversations as early as possible in an honest and sensitive manner.”

Sonya Brown, 53, from Lanarkshire, said:

“I discovered my husband Alan had a DNR by chance when the form was left in a folder on my sofa, after he was discharged from hospital last March. I was overwhelmed when I saw it. At no point did anyone explain that his lung cancer was progressing and this was normal. We felt completely adrift. I felt such guilt about the DNR. I now understand the rationale for one being in place – he was dying of lung cancer and CPR would not have changed that – but what I don’t understand is why no one thought to phone me and talk to me about it, particularly when I couldn’t be with him in hospital because of lockdown. I was totally unprepared for Alan’s death.

“It’s all about communication; that is what needs to change. I know it can’t be an easy conversation to have, but that’s why people need training. There is no excuse not to have it – if you are making this decision for a patient you must involve them and their family. It should not be a shock like it was for me, turning up out of the blue as I was coming to terms with the fact my husband was terminally ill.”

*ENDS*

For more information, photos or interview requests with Compassion in Dying spokespeople or people with personal experiences, please contact Molly Pike, Media & Campaigns Officer on 07929731181 or email Molly.Pike@CompassioninDying.org.uk

Notes to Editor

Compassion in Dying’s report ‘Better understanding, better outcomes: what we’ve learned about DNACPR decisions before and during the Coronavirus pandemic’, published in March 2021, can be downloaded here: https://compassionindying.org.uk/wp-content/uploads/2021/03/Better-Understanding-Better-Outcomes-DNACPR-decisions-before-and-during-the-pandemic.pdf

DNR queries to  Compassion in Dying

The proportion of queries mentioning CPR and DNR to Compassion in Dying’s free, nurse-led information line more than doubled from 6% in 2019 to 13% in 2020. The highest proportion of calls on the topic last year was in September, at 16%, corresponding with an increase in media mentions of DNR decisions. The proportion of calls on DNR was over three times higher in September 2020 than the same month the previous year (5%).


DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) decisions, also known as DNR (Do Not Resuscitate) or DNAR (Do Not Attempt Resuscitation) decisions

DNACPR decisions are made by a clinician to prevent people from being given CPR inappropriately, when it could do more harm than good. The decision is usually recorded in a form, which tells other healthcare professionals about the decision not to attempt CPR. If someone has a DNACPR decision, they will still be given all other treatments that are deemed appropriate, including other types of life-sustaining treatment, and treatment to keep them pain-free and comfortable. By law, a DNACPR decision must be made on an individual basis and communicated clearly to a patient, or if they lack mental capacity, those close to them.

People can decide in advance if they do not wish to receive CPR. They can ask their doctor to record this refusal in a DNACPR or similar form. If a person wants this refusal to be legally binding they should include it in an Advance Decision.

Living Wills (Advance Decisions to Refuse Treatment)

[v]Advance Decisions to Refuse Treatment, commonly known as living wills or advance directives, are legally binding documents which allow an individual to record any medical treatments they do not want to be given in future, including CPR, in case they later lack capacity and cannot make or communicate such a decision. Providing an Advance Decision is valid and applicable, it is legally binding under the Mental Capacity Act (2005).

How to make your wishes for care and treatment known if you get coronavirus

Compassion in Dying’s tailored information, developed with lawyers and clinicians, can be found here.

About Compassion in Dying

We can help you prepare for the end of life. How to talk about it, plan for it, and record your wishes.

We help people through our free information line, publications and resources, and through our work with diverse communities. We specialise in supporting people to make Advance Decisions (‘Living Wills’) and to talk about their goals and priorities when living with a life-changing illness. Our free MyDecisions.org.uk website helps people to record their wishes for care in a legally binding way.

Have any questions? Talk to us.

0800 999 2434

info@compassionindying.org.uk